Wednesday 28 September 2011

I do know the birds were singing

Just for the record if the Pants thinks that introducing his old sleep habits of staying up moaning and crying until 5.30am is going to buy him get out of jail free cards from nursery and boot camp he can think again.


Two nights on the trot he has refused to sleep. Nothing works. I don't even know what time he actually went to sleep last night (or morning) I do know the birds were singing and he was still carrying on. Needless to say he has missed one nursery and one boot camp. 


Hoping he goes to sleep tonight. Either way he is going to nursery tomorrow. Sleep or no sleep.

Sunday 18 September 2011

Only if he made a noise.

Zack's speech therapist came for a session this week. She brought some toys. 


She tested to see if Zack would choose between something exciting and something dull and yep, definitely makes choices.


I told her that Zack has changed quite a bit over the last few weeks. He is making a lot more vocal noises. I told her about our little game that we played whereby he would shout for me and I would go to him and make him laugh.


I told her about the other day when Dan and I were cuddling him and stopped only going on to cuddle him again when he made a noise which he did, several times.


So she pulled out some exciting spinning, flashy light toy and yes, he was telling her to do it again by touching her. This time we decided to not switch the toy on when he tapped her but to do it only if he made a noise.


This resulted in Zack having a big paddy. First his hands went circling like mad then his foot stamped and finally he shouted. Bingo. Toy came on and Zack sat bolt up-right. We carried on doing this for a good twenty minutes and he got increasingly quicker at responding until he got tired so we stopped.


It's really tough for him to shout but it turns out he can become vocal when he wants. She's left me the toy to practice with, oh this next week is going to be very noisy.

He looked rather bemused by the whole thing

The plaster was well and truly pulled off. I did it. I left him. My little Pants all on his own.


I took him into nursery on the Tuesday morning and the lovely staff there asked if I wanted to stay and go for a coffee again. No, no I said, I am going to go. Remarks were made about how I was brave and such, more like I knew I had to do it fast otherwise it would just drag on. 


I gave him a snuggle and a kiss and told him I would be back in a bit. I could feel myself welling up and with that I said to the staff "Okay I am just going to go as I can feel myself getting upset. I'll see you later."


And off we went, Scarlett and I, to console ourselves with a cooked breakfast in Debenhams. She thought it was great as she got to have toast. I actually enjoyed myself as I got some time to myself.


Two and a bit hours later we were back to find Zack sat around a table with four other children. He hasn't got a seat sorted out yet so he was in a buggy with a large snake wrapped around him. (A stuffed snake, what kind of nursery do you think this is?) He looked rather bemused by the whole thing.


Apparently this is what he got up to:


1. Tried a taste of cheese and chives but didn't like it so had some raspberry lip balm on instead.
2. Went in the sand pit and covered himself in sand
3. Had a story read to him and really enjoyed it.
4. Joined in the sing song session with all the other children and loved that, smiled throughout apparently.
5. Went in the sensory room and got annoyed at lying on the beanbag so got picked up and then was happy.
6. Played with some bead type toy that makes music and put both his hands through to join them together (mid-line playing always important).


You can see he had been a busy boy. I know it's early days but I think that they still haven't completely understood his hand actions yet. Take the sand for example, I think the scooping it all over himself which was deemed to mean I like this feeling of sand may have been him getting a bit miffed. It's been mistaken before that his pawing at stuff is him feeling things but it isn't, it's usually to tell you he doesn't like it. I think when I go back on Tuesday I am going to have another chat and perhaps stay to see an activity so that I can show them what I mean.


The other thing is his seating. He was okay in the buggy but he was lying back a bit and I could tell that he wasn't completely happy. I asked them to sit him up and hey presto bit happier. He couldn't quite see what was going on when he was a bit lower. Hopefully the O.T should have sorted out some seating for him next week. 


There is no doubt in my mind that he is well looked after there and he will get to do lots of fun things. I just think that it will take a couple of months to get to understand his mannerisms and little non-speech cues.


Our lovely private speech therapist is going to go into nursery and have a chat with them so hopefully all this will go some way toward understanding Zack.

Wednesday 14 September 2011

Rip the band aid off

Well it's a week of firsts.


Summer is over, not that we had a summer. Feels like a perpetual Autumn. And with September in place Zack was back to his conductive education. I was dreading taking him back as it had been six weeks without any hardcore classes. I was expecting much crying, shouting and general I hate this commotion. Not one to stick to the plan, Zack spent his first session, smiling and having a great time. Even with his arm splints on he didn't mind. I was a very proud mummy. 


Oh and I took Scarly Bum with me as both sets of Grandparents were away on holiday's abroad. Yes, how dare they book their holidays at the same time, do they not understand planning? It's okay, I can say all this knowing full well they read this blog. Think on next time. (P.S Hope you are having/had a nice time.)


Scarlett was very well behaved. She had a great time rolling along all the mats and even joined in on the sit down say hello to everyone session. Torture school is now known as Boot Camp. We went again today. We are now going twice a week. Zack wasn't as happy during this session, but only cried a little, for the majority of it he worked really hard. I think the twice a week approach will do him some good. 


This week, Zack also started nursery. It's a special needs nursery in Warrington and it's fantastic. He has his own red school bag. It's nearly the same size as him, but I'm sure he'll grow into it. He went for an hour and a half session and I left him their for an hour on his own. I was only in the staff room having a coffee and chatting but he apparently enjoyed himself. Even went outside to play.  I take him tomorrow for his first full three hours. My plan is to leave him there on his own for the full session. You know, rip the band aid off in one painless tug. That's the plan, whether I go through with it is another matter. 


So now The Pants has a busy weekly schedule. Tuesday and Thursday nursery, Wednesday and Friday Boot Camp, Monday day of rest. What a lot of changes but all for the best. I think this will do him the world of good and also be good for me too. Plus I get to spend some one to one time with Scarly Bum who in the space of a couple of weeks has cut her first tooth, moved on to chunky food, enjoys finger foods, particularly biscuits and can almost sit on her own. Amazing. But lets not forget about the first born who now laughs nearly every day and is becoming more vocal. He really is a little star. Busy but good times.

Tuesday 6 September 2011

I can't help the way he makes some people feel

It's funny how people react to someone who is disabled. Some are completely at ease, others uncomfortable, some stare and some look elsewhere.


We went to a social event recently and one that called for me to feed Zack at the venue. I used to be uncomfortable doing this as people would often stare, now I just don't give a crap. Zack needs his food and this is how he eats. End of story.


What I don't like is people who blatantly stare at what you are doing. Yes it does look unusual I am pushing food down a tube from a 10ml syringe into my son's stomach. In all honesty I would probably look too. Stare? No I wouldn't do that. 


I want to say for the record, just ask me. Ask me what I am doing. I don't mind, I'd rather your curiosity be satisfied than you just stare. I usually stare back, or glare, makes most people look away.


Friend's reactions to Zack are also interesting. Some people we know are very good with him. Get straight in there, hold his hand, say hello, give him cuddles, talk to him. Just as you would with any other child. 


Others don't really respond to him at all and that upsets me. I don't want people to feel uncomfortable around him. I don't want them to not know what to say or do with him. Come and say hello to him, talk to him for God's sake. Okay he won't always respond but ignoring him is rude. I can't help the way he makes some people feel and I can't help the way some people feel about disability. Maybe they need to understand that being different is hard enough without others treating you differently. I don't ignore the children of friends so why should my child be ignored. 


For those of you who may be reading this blog and do not know of anyone with a disability next time you see someone who is disabled talk to them, they understand, they deserve to be treated with as much respect and courtesy as you would expect people to give you. 


Don't be afraid of a child that cannot speak, or walk, or talk he has much more to teach you than you could imagine. 







That's Deirdre Barlow

We have had a very nice two weeks off with Dan. We managed to have some days out including a trip to a garden centre with a mini train. I mean, they had a mini train, we didn't take one with us. That would just be foolish.

It was a gorgeous day, made a change as the weather had been rubbish as per usual. Zack planned the evening before not to go to sleep so he had about two hours kip and was cream crackered. Didn't stop us continuing with our plans so off we went. 

An hour later after three arguments with the Sat Nav we found Brookside Garden Centre. Enjoyed a spot of luncheon, listening to old women who tried to out-posh each other with their put on accents. Honestly, it's not like they were at Bents (the Marks and Spencer of garden centres). 

It was then time for Dan to take the Pants on a train ride. He bought two little tickets and off they went.

He returned on the train three minutes later shaking his head. Apparently Zack was not a fan of the train and did not enjoy it. 

"Oh well, never mind" I said. "If I tell you something will you promise not to stare?"

"What is it asked Dan?" slightly confused at my off centre conversation.

"Okay, but promise." "Right. Yes. Promise."

"See over there in the children's play section, that's Deirdre Barlow off Coronation Street."

What does he do? Stares. For goodness sake, he gets so star struck. Yep, Anne Kirkbride enjoying an afternoon with, presumably, her family.

Pleased with our afternoon of star spotting, luncheon and train ride we made our way home.

"What should I do with the train tickets?" asked Dan. 

"I'll put them in his memory box." I replied. I have a little box under Zack's bed for all his keepsakes from days out. 

Dan looked at the tickets, then looked at me. "Well, it wasn't a very happy memory for him was it."

Suppose he has a point.

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